"I feel weighed down"

The lack of understanding I've experienced over the last few days has just been ridiculous. I went for a medication review yesterday and they start looking at all my medications. I am on a different combination of medications for pain but that's because each work better at different times. Then the conversation goes to" you've been on that for quite a while now maybe it's time to decrease the dosage down and then eventually look at coming off it?" I just look at them because they believe that just because they can't see the amount of pain I battle with my endometriosis they assume I'm "okay" and think I don't feel it emotionally as well. They must expect me to be completely cold hearted and not feel anything. Just because I look "okay" certainly doesn't mean I'm okay. There's this perception that young people don't get unwell. I didn't ask to have endometriosis at such a young age. I am not the cause of my illness. I'm sorry I'm on tramadol which is a controlled drug because that's the only thing that helps when my pain is out of control and normal painkillers are doing nothing to help. The view that only older people are prescribed tramadol for pain because it's not normally something they prescribe to someone that's 19 years old. I'm sorry my body is shit and doesn't work like a normal persons would. To then find out yesterday when picking up my prescription they couldn't give it to me because the doctors had cancelled my medications and being told I had to go through my GP to find out why. There was an agreement I had with another doctor that we'd create a pain toolkit so I'd always have strategies for when the pain is bad and to be able to manage at home but to find that all the medications in this had been taken off just made me even more angry. I'm expected to deal with the symptoms of my illness, surgery and dealing with my medications when that should really be the GP's job and communicating with the endo team about what's happening because my GP hasn't made any contact with the nurses. What's the point in an MDT when they're not even using that approach?

I spoke to the endo nurse specialist today as it was the MDT meeting this afternoon. I left a message with her because I wanted an update of what's happening and to also tell her about the GP situation. She phoned back this afternoon and told me my MRI scan was reviewed at the meeting and the team have decided that colorectal input is definitely needed because of how complicated the surgery may be because of the location of the endometriosis but I'd get a letter explaining the meeting soon. I asked her about my medications and she said that it wouldn't be advisable to change any of my medications because of how difficult things are at the moment with going through so much and that's in her clinical opinion. She told me to contact the surgery but I can't just drop everything and make an appointment I have work so I wrote a letter for the doctor to read in the morning. It was easy to get it all down on paper with what I wanted to say about the whole medication side of it but trying to be honest about how I feel has been the hard part.....

People just don't understand how much endometriosis impacts a person's life. It's waking up in the morning more exhausted than you were the night before. Not knowing when the next flare up is going to happen and when it does being confined to your bed and medicated up with strong painkillers. The times when you have to phone into work and admit that you can't manage to come in because the pain is so bad. It's watching other people go on and live their lives while you are stopped by the chronic illness that's in the way of everything. The questions from professionals about whether or not you want children in the future and having to think ahead is just as scary. It's being on medication to control other issues that endometriosis causes within the immune system. It's finding it hard to speak out about the illness because you can't find the words and people assume it's just "period pain" which we as sufferers know it's not. It's dealing with constant side effects of medications that we're put on. Its the endless appointments discussing treatments and future surgery. The ways of controlling this horrendous condition because there is no cure. Feeling uncomfortable in your own body because of how distended your stomach is and it making me look about 3 months pregnant. People not knowing what to say to me and watch as they give me a hug and get emotional. It doesn't just affect me if affects those around me too. Did I forget to mention that I am devastated by this illness?